Who Owns Your DNA?

Twenty percent of all human genes have been patented by the companies that isolated them. That may not seem like a big deal, until you have to pay $3,340 for a breast-cancer test that could have cost $300. Bioethicist Lori Andrews is fighting back—all the way to the Supreme Court

By Nina Burleigh

Photograph: Dan Winters

Fueled by iced tea, chocolate and Coca-Cola, Andrews is variously described by colleagues as a phenomenon and a dynamo. She lives alone in a Chicago town house, where she says she gets by on four or five hours’ sleep and spends her off-hours writing mystery novels (in all, she’s published 14 books of fiction and nonfiction). Her ex-husband, with whom she has a son, now 23, is apparently still besotted, since he buys her a piece of jewelry every time she notches up another book or major legal win. On the day we meet, she is wearing one of his many postdivorce presents, a delicate antique amethyst-and-gold Art Nouveau necklace.

Born and raised in suburban Chicago, the elder of two daughters of a pharmacist and a homemaker, Andrews has been an overachiever since high school, when she began publishing articles in teen magazines. Her mother was “hugely disappointed” by her decision to go to law school, Andrews tells me. “She said, ‘Listen, I don’t need a lawyer—I’m not going to divorce your dad, I don’t want a name change, and I already have a will. But if you went to beauty school, you could do my hair once a week.’ She was serious. This wasn’t ribbing me.”

Andrews passed the bar exam in 1978, on the day the first test-tube baby was born. Launching her career, she gamely fended off all the era’s first-woman-in-the-office sexism, which her personal appearance only exacerbated. After carving out a specialty in the legal twists and turns of reproductive technology, she founded Chicago-Kent’s Institute for Science, Law and Technology, which she still heads. “I came of age with the first generation of legal abortion,” she says. “Even a conservative female justice of the Supreme Court, Sandra Day O’Connor, talked about how reproductive control was central to women getting educated and having careers.”

Eventually, Andrews’s niche expertise in reproductive technology made her the person to call for anyone with law-health-tech issues, and in 1995 she was appointed chair of the advisory committee to the Human Genome Project. By that time, the cases that were finding their way to Andrews had gotten so bizarre that her secretary thought some of the phone messages were practical jokes. A surgeon once called from the OR to ask if it was incest to implant an embryo in a woman’s womb if the sperm had come from her brother. A U.S. senator asked if he could ban genetic engineering by making it a crime to insert DNA into an egg. (Her response: only if you are banning all forms of reproduction.) She has considered a variety of unreal-sounding issues, including whether a cryogenically preserved head can inherit property and whether sperm extracted from the comatose can legally be used to make babies. “Usually they are looking for someone who can say, ‘Here’s the likely legal input if we go down this route,’ ” says Andrews. There are few precedents to quote in these areas; Andrews uses her experience in the field to engage in highly informed speculation. “In part,” she says, “my work is like writing science fiction.”

At the same time Andrews was honing her skills, researchers at the University of Utah in Salt Lake City were working toward a breakthrough that would have a tremendous impact on women’s health and give Andrews the biggest case of her career. In 1994 researchers sequenced the BRCA genes. One of the researchers had formed Myriad Genetics and under its name applied for patents on the discoveries; the company was awarded 23 patents covering the genes and the testing for them. This means, in practical terms, that every woman who takes the BRCA test must pay a fee to Myriad and that no researcher can study the gene sequence from any woman without Myriad’s permission. Myriad has also developed a supplemental test, called BART, that detects another, rare type of mutation in the genes. Cost: an additional $700. Finally, because the company has done so much testing, it has better information than any other company or research group about which mutations in the gene sequence cause breast and ovarian cancer. It used to share this information with a public database maintained by the National Institutes of Health. But recently Myriad stopped sharing, preferring to build its own database.

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Good article. Another fascinating read on medical unethicalness is "The Immortal Life of Henrietta Lacks written by Rebecca Skloot"which goes into how the medical industry put patents back in the 1950s on Ms. Lacks very unique tissue samples unbeknownst to her family...Much more public education is needed on this topic.